I’m feeling profoundly sad today. Even though my sza son is doing relatively well, he just had his first day of a new job and says, “I don’t think my co-workers like me.”
He is having a hard time keeping up with the training. He says, “I felt like dead weight”.
It reminds me of when he was a child and was ostracized at school but now he is 30 yo and this is not going to go away.
I am in the middle of applying for SSI on his behalf, but then he got this job so that will mean denial of his claim. It would be great if the job would last, but I really doubt that it will. This fear of the coming loss and my son’s reaction to it is also adding to my general sense of dread.
I haven’t stopped hoping but it is a faint hope.
I run into the parents of his former friends and feel such a sense of grief for my son. These parents are filled with stories of weddings and promotions and lives so utterly different from our own that I don’t even feel envy- just “otherness” if that makes sense?
I am feeling sorry for myself I guess and I am posting this now because I know that you all can relate.
I am so sorry for your sadness. These feelings are valid and I imagine everyone of us have these feelings along the way. I look at it as a form of grief. Grieving for the life we lost. At the same time I think of it as a different journey. As a special education teacher I was always on the other side encouraging my parents that this journey although will be different and difficult it will also have its rewards. I don’t know why our loved was picked for this journey or what the outcome will be but I hold on to hope that there is a purpose that is greater than I understand. So be okay in your sadness but embrace that the love you have for your son is far greater…
Yes, this makes sense to me. At such times I feel as though I have dropped down a rabbit hole and ended up in an entirely different world.
“The rabbit hole went straight on like a tunnel for some way, and then dipped suddenly down, so suddenly that Alice had not a moment to think about stopping herself before she found herself falling down a very deep well.”
Suddenly we found ourselves here, and there is no getting back. Try as we can, we can’t communicate it to the people who aren’t here with us. There is some sort of translucent curtain that keeps them from understanding what we now understand. The feeling is well described as “otherness”.
As they say we should do with grief, leaning into it is better than stuffing it back down. I lean into it, I let the feelings run through me and then I step back from it.
thank you hope
your words help me to feel understood and less alone.
I like the lean in idea - at least I know stuffing it down doesn’t really work.
I understand your feelings, for sure @nowwhat . And the “otherness” is a true situation. No one can understand if their family members are all healthy. Severe mental illness causes changes that a “normal” family can never truly understand. Thus the “otherness” is a real thing.
My daughter lost several jobs before finding one that lasted. I had to find her all of her jobs. Keep trying for your son. I think that your goal to have him working is far better than being on disability only, for his long term sense of worth.
Agree. If you try and fail at a job at least you’ve learned something which will help in the future.
If someone is trying to socialize I think that support in the way of weekly counseling should help.
Hello Nowwhat,
Definitely share your pain. I have felt the depths of despair over my son’s diagnosis and hardships he has suffered because of it. I have grieved over the life I expected him to have. He and I both just want a simple and happy life for him. Not sure when that will happen. He has spent most of 2022 in jail. He was on hospital list for treatment but didn’t happen. Going thru mental health court now. Just taking it day by day. He hasn’t responded to my emails in over a month. I still have hope. I do what I can to help him. I wouldn’t wish this disease on anyone. Hang in there. You are not alone. Take care.
Thank you for sharing. I agree with and have experienced the same sadness for me it comes in cycles. My son graduated from college prior to his diagnosis and cycles in and out of jobs and careers depending on his addiction and mental health issues.
I appreciate the understanding here in this group and hope we offer that to you in a way that provides comfort.
I feel I’ve experienced all sides of this. Being othered, the otherer, othered by association; feeling sorry for myself, the cause of other peoples sadness and the one being felt sorry for. The last two are my least favorites, but they all suck in their own exquisite ways.
I started my first “real” job after diagnosis 35 years ago. Like your son, I felt people didn’t like me, I wasn’t doing a good job, felt like dead weight and on and on. I needed constant reassurance from that I was doing okay, that they weren’t going to fire me, etc. For years I continued with that company, concerned I’d be fired, or feeling like an imposter, until I arranged to go back to college and finish my degree. Only then did I feel secure enough during rounds of layoffs when I felt certain “vibes”, I’d nonchalantly ask “is there anything, I need to know?” Until that answer was “yes”, and after nearly 15 years of crying wolf, I was out of a job. But I found another one within a few months and I stopped worrying quite so much.
I’m not saying your son’s outcome will be anywhere near the same. I had nearly finished college in a field that was in demand, I had very understanding employers and worked for a company in the beginning of a big upswing, so I was extremely lucky. But I caution you that the same sensitivity to “vibes”—real or imagined—that tell your son that his coworkers don’t like him, may pick up on your feelings of sadness or hopelessness which can be contagious. Try to bury them deep when you’re around him, and vent, validate and attempt to vanquish them in places like this forum, therapists and anyone else you trust.
He needs a cheerleader, as he has a well of sadness and doubt that likely rivals or surpasses yours. So take that little bit of hope and run with it. He’ll likely pick up on the act, but no matter. What you’re doing is modeling coping mechanisms that might get him through the next day at work, or the next job, or whatever next thing that keeps you both going.
Thank you for writing- it is true that this is a different journey. I know there are rewards of a sort- for example learning what is most essential in life.
Sometimes the grief is overwhelming but today I feel better and I appreciate having this group to talk to!
I am so sorry to hear that your son had to spend time in jail. That is one of my son’s biggest fears- mine too. I don’t know how the hospital treatment lists work, but I have heard promising things about mental health court. I really hope that he is given the treatment and care that he deserves.
Thanks for writing -
I appreciate your perspective as someone who themselves is living with sz/sza.
I know what you mean about “vibes”. My son has enormous antennae that pick up on every emotion. I’m far from perfect and have definitely added to his uncertainty at times, but I am definitely on his side and he knows it. He calls me his best friend.
Dear Nowwhat,
We can totally relate to your situation. Our son with schizoaffective has had a number of jobs that don’t work out. Hopefully he can eventually find something part time that gives him structure and some degree of socialization. Please don’t stop the disability process. It takes awhile and opens up more services for him.
One thing we learned early on in the NAMI family to family class is that we have to learn to grieve the loss of the son/daughter we hoped to have.
Hope this helps 
My son was very down on himself last week.
Something made him smile unexpectedly and I told him he has the nicest smile (he does).
He said no one likes him and I said “who couldn’t like someone with a smile like yours?”.
I could tell I had said something finally that made him feel good. I think our loved ones need validation on simple things others take for granted. I hope this conversation will encourage my son to smile more at work; maybe and maybe not. But it made me think that I can be his cheerleader when he can’t muster any self confidence. We have 3 other children who are neurotypical and have their own lives and loves. But as my husband and I age, we are a team of 3 with our mentally ill son. His accomplishments are so meaningful because of the barriers and mountains he has had to climb to reach them.
I very much like the idea of leaning into grief without staying too long in the “what if”.
Somewhere somehow this struggle has to have meaning. Finding grace in our collective suffering.
Yes it is very sad that others live a normal life. I use to feel like you, but now that I have accepted my son, as he is now, things are better.
My son is on disability and the one time he got a job, driving a small truck, it lasted one day, after training. He just couldn’t do it…
They can work part time and still get disability.
My son is good on his meds, and happy with his guitar. Love them as they are.
@serenity
Thanks. I am not holding my son up to some unrealistic expectation. He was diagnosed with a SMI 12 years and has never been able to hold a full-time job. The reason I feel sad is because I know how much he wants this job. It is a part-time job (3 days a week) and pays hourly but may take him over the amount allowed by disability. We will wait and see how that goes. I appreciate what you are saying and yes I do love him as he is.
I understand and totally relate to your feelings.
My son (30 yo) has been struggling to find his space in the world, facing all kind of rejections, it breaks my heart.
After over two years living on the streets, without medication, he finally accepted treatment and is slowly finding his way back to life. But I know his life will never be easy, and a part of me will always be sad.
Your words are encouraging. I just feel hopeless and dont know where to begin. Everything is overwhelming.
Well apply any way because it takes awhile…and their are perameters, as they approved my son at 18,but later he went to work for 3 mo ths…and they just have you report their income and deduct some…so u still get some…and if under amount can still get medical and snap.for food…when one parent retures they can get 1 /3 amount of ssa from. Ssdi if more than ssi…
Find NAMI near you - take classes and join support group. Many have zoom. Read books - “I’m not sick, I don’t need help” is very popular on how to communicate with LO when they don’t recognize their illness. Many others as well. There are many websites - SAMSHA, SARDAA, etc. Just google serious mental illness and read what speaks to you. And most importantly, TAKE CARE OF YOU. You can’t help anyone else unless you take care of you. I joined this facebook group - BiPolar SMI Family Education and Advocacy Group. Michael Uram is one of the admins. He teaches a class “Love Can’t Fix Bipolar and other SMI” It’s free but need to register. He’s a well of info and insight. Keep coming to this sight also - lots of helpful people and info. Take care.